Feeling very scared

I saw this....A wide spectrum of benign and malignant diseases can produce a mass in the head of the pancreas. It can be solid (ductal adenocarcinoma, chronic pancreatitis, endocrine tumor) or a cystic lesion (cystic neoplasm, true cyst or pseudocyst). The most important question is whether or not it is a malignant or benign tumor.What are your symptoms, if any?

Pancreatic cancer appears differently, depending on which part of the pancreas the tumor is in, whether the “head” or the “tail.” Tumors at the tail end are more likely to result in pain and weight loss. At the other end, head tumors cause fatty stools, weight loss, and jaundice.

I hope you are negative and maybe this has helped you to know you can have a mass and it not be cancer. Good Luck! 

Hope you had good and definitive results from the PET scan and biopsy. Good thoughts and prayers for you.

I just recently found a great resource that may help you face the future with less fear.  It is a book called Radical Remission by Kelly A. Turner, Ph.D.  This author provides a wealth of information and techniques that Western medicine has barely explored but has been used for centuries with incredible results.

While there is far too much information to mention everything here, you may certainly want to explore changes to your diet and connecting/reconnecting with your spirituality.  Always look for the positivity and joy that surrounds each of us and thank God for each day.

I too am stage IV pancreatic with mets to liver and doing well. You are not alone. :)

Folfirinox - 46 hr infusion every other week. Initial Dx in Feb with zero previous medical history or illness.

Surgical Onc was hoping for whipple, I had to play the biopsy game with inconclusive results. It walked like cancer, talked like cancer .. but .. constant testing for staging delayed any treatment so the scalpel jockeys then handed me off to medical oncologist once imaging confirmed mets. The chemo IS doing it’s part, my side effects are few and easily manageable. Super grateful for my oncology team!

What is your regimen, how many cycles? How’s it going for you?

btw, I appreciate you sharing your journey, thank you for that! We lowered my Irinoteca after first tx due to severe side effects and i've remained on the same regimen since...on #11 (or maybe its #12) next week. My marker has continued to drop as well and according to my previous images (nearly 3 months ago) I was grossly stable with some reduction in size. My next images are scheduled for Jan., will see what happens next when those come in. I certainly hope you find a plan that offers you what you require without any of your previous side-effect nastiness. *fingers and toes crossed* Please keep me posted, I'll be thinking about ya. 🙂

Was NextGeneration Sequencing (NGS) performing on a tumor biopsy specimen to determine its molecular profile? If there was insufficient biopsy material, a liquid biopsy can be performed on a vial of blood to look for germline (inherited) mutations. This is the first step in Precision Medicine….looking for actionable genes that leads to Targeted Therapy. The information allows the oncologist to customize a treatment plan specific to the genetic make-up of the tumor. If an inherited biomarker is found, an oncologist can prescribe a treatment specific to it. The information is valuable in determining suitable clinical trials. I took advantage of a liquid biopsy that identified an inherited mutation. This allowed me to search for a clinical trial specific for that mutation. The BRCA gene mutations are implicated in colon, pancreatic, breast, ovarian and prostate cancer. If the tumor on the pancreas is a primary tumor (unrelated/ not metastatic to the colon cancer, your oncologist likely would order NGS or a liquid biopsy to see if BRCA, PALB2 or ATM genes are a factor in driving these cancers.

The pancreatic Cancer Action Network (PanCan.org) provides free NGS testing to any pancreatic cancer patient in the USA. The program is called Know Your Tumor and information is on their website or you can call Patient Central of PanCan.org at 877.272.6226, M-F, 7:00am - 5:00pm PT.

Check with your oncologist as to whether a biopsy specimen was sent to an NGS lab for profiling. Three common labs are FoundationOne, Invitae and Guardent360. PanCan.org uses Tempus Labs. You likely would have been presented with the report if it has been done. Here is the link on the information about the free Know Your Tumor program- https://www.pancan.org/facing-pancreatic-cancer/patient-services/know-your-tumor/?utm_campaign=patient-campaign&utm_medium=offline&utm_source=patients-and-caregivers&utm_content=body-know-your-tumor

PanCan.org is currently closed until January 2nd. Call them and they will provide information you can provide to the oncologist on how to be tested. Genetic profiling made all the difference in my successful treatment and long-term survival.

Hello. Today is my first day on this site but I am it the 'in between zone' and feeling stressed. I was diagnosed with Stage III at time of Whipple for IPMN 8/5/202 and then did 24 weeks of FOLFIRINOX (finished 2/9/21). Found out after all chemo/surgery done, in June 2021, that I carry the CHEK-2 gene but my tumor was never tested. Hospitalized in Sept 2021 with pancreatitis and ever since then been doing CT and PET scan looking for reason and recurrence. Well 2 weeks ago my PET scan lit up and my CA19-9 was elevated for the first time ever. Now genetics of tumor being done (pending). A bx 2 days ago was done by Interventional Radiology but non-diagnostic. So I reached out to PCAN for clinical trial info but it is so overwhelming. I was not getting any calls or messages back from my onc with my Follow up 2/24 (PET 2/2) so been anxious! Finally found out today that they are presenting me at tumor board Monday 2/21 with a FU with her after. But how does one decide what trial to enroll in? One doc says since I did FOLFIRINOX due other chemo standard but most people say do trial and try to get on targeted or immunotherapy. I also made an appointment for MDAnderson CC for 2nd opinion but I am afraid that will irritate my oncologist....

What are all your experiences? It's hard to know it's back but not have a plan....